Playscheme

We survived the summer holidays! Nothing brings home the fact you have three children like having them all at home for six weeks . It is inevitably chaotic and puts all other meaningful activity on the backburner, but it’s also fun. We don’t all have to be up and out first thing in the morning, remembering school forms and PE kits. We can go to new places and hang around in the garden.

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The secret to communal happiness for us (me) is to have some structured activities, ideally not involving me, lined up between the museum outings and home-based craft projects. We are fortunate that Sam’s school runs a two week playscheme in the summer, and even more fortunate that we have funding for him to attend for one of those weeks. We pay for him to go for a second week.

Running a playscheme for kids like Sam is not straightforward – you need a suitable building, loads of staff with the right expertise. They are expensive because the ratio of staff to children is high, which means either schools or councils have to subsidise them or they are prohibitively expensive for parents. As a parent, it is difficult to find any holiday activities for our disabled child where we feel confident leaving him in a new place with unfamiliar people. I will only send Sam to this playscheme because it is at his school, staffed by people who work there so know him well – these are people who are used to feeding him through his tube and can communicate with him. It’s not the closest holiday scheme but it is the most appropriate.

So for the last few school holidays Sam has spent a week at this playscheme, which is exactly the kind of age appropriate, fun holiday activity I’m into. What I’m even more keen on is the typical experience of two brothers who are a couple of years apart in age being able to do the same holiday things, at the same time, and that is exactly what this playscheme offers. They welcome non-disabled siblings so this year Eli went with Sam for four days.

Hurrah, we all shout! Except (and isn’t there always an ‘except’) we need to work out how to get them to and from a playscheme that is five miles from our house each day. Sam is theoretically provided with transport to do the morning journey for one week, but all of my emails to confirm this have gone unanswered and in the week before the playscheme, I still have no confirmation whether the bus is coming and if Eli will be allowed on it. There are some mutterings about insurance (or lack of it) for Eli. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Sam to and from school during the term. She works her magic, and calls me back the following day to say she has confirmed the crew that usually take Sam to school will be there on Monday morning, ready to take Eli and Sam.

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I cannot overplay the value of Ms A. After weeks of me emailing and calling social services and the school transport service (as I do in the weeks leading up to every playscheme) and getting precisely nowhere, she smooths the path and makes it work with a driver and escort who are familiar to Sam, and with enthusiasm for Eli joining them. People like Ms A are the ones who brighten my days.

And so off they went! Sam went on his own some days, and Eli joined him on others. They swam in the hydrotherapy pool and did some DJing. They made spiderman masks and puzzles.

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One day I collected them and a young woman was accompanying the boys down the corridor towards me. I could see they were relaxed and happy. She introduced herself and then, in a low voice so Eli couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Sam, that he’d made some funny jokes. She said her sister had gone to the school and that was how she had got into helping at playscheme. She seemed like exactly the kind of person I want my kids to hang out with.

This is unusual – it is not standard to have access to a playscheme where you feel really confident people understand and can care for your child, where they will be happy and safe. It is rare for non-disabled siblings to be allowed to join in with these kinds of activities. It is unusual to get funding for a week which includes help with transport to get them there. In fact, in a stunning display of bureaucratic madness, a classmate and friend of Sam’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Sam’s bus went past the end of his road each morning without being allowed to pick him up, despite there being room. It was the same bus and crew that normally picks him up for school every morning. I despair.

After two weeks of Eli and Sam spending time doing all of the fun the playscheme had to offer, we were ready to spend more time at home. I geared up to organise trips. We did loads of interesting things, but I worked hard. It takes thought and planning to find activities that work for a disabled eight year old, a six and a two year old. Holidays are fun but intense, which is exactly why a playscheme like ours is so valuable.

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There is a temptation to see such playschemes as a luxury but there is literally no other holiday scheme, club or session that Sam can go to without me or a carer. It is entirely appropriate for an eight year old to spend parts of his holiday without his mum, and to have the opportunity to do different things. It’s a crucial part of growing up.

From my perspective it’s brilliant. Sam said that he enjoyed it, and Eli asked if he can go every day with Sam next year. I hope so, my boy, I hope so.

 

 

Lucky

IMG_9945I’m trying to institute a new tradition in our house: on each of the children’s birthdays we will all get up and do birthday breakfast, open presents and be generally celebratory, and then I will go back to bed for at least an hour. I think it is a good idea for all of us to remember that this is the anniversary of these kids coming out of my body and that body could do with a little lie down.

Stella’s birthday a few weeks ago was the first time I implemented this brilliant new tradition, and as I was lying down remembering her birth two years ago, I read an article by Chitra Ramaswarmy about her tendency to catastrophise. It was poignant to be reading about how incubating and then having children affects your outlook on life, particularly if one of your children is diagnosed with a disability.

Ramaswarmy experienced a very tough year in which numerous difficult things happened. By its end she had – after a complicated pregnancy – given birth to a healthy baby, her partner and mother had been seriously ill and recovered, and her son had been diagnosed with autism. Was it a year of disaster or, actually, was her family lucky?

Ramaswarmy describes how she is naturally a catastrophist, and inclined to be anxious about the potential for the worst case scenario to occur. She makes the case that the parenting is an antidote to catastrophising:

‘The hard graft and small, pure joys of looking after a baby and a little boy with autism anchor me to the present. The baby keeps me healthy, makes me feel lucky and gives me a constant dose of perspective. She is also exhausting: I am too tired and busy to catastrophise with as much fervour as the habit demands.’

This rings true for me. I am not a catastrophist. My natural tendency is towards slightly anxious optimism. But there is no doubt that I thrive when I am rooted in the present, and nothing keeps you in the present like having a small child, and then another, and then another. It’s not all rose-tinted snuggles – Sam’s early months were difficult for us all and he was frequently made miserable by reflux and feeding difficulties. But my focus on looking after him meant that by the time I looked up and around we had largely weathered the storm.

I went on to have two more babies and, luckily for all of us (and I mean luck, because these things are just a roll of the dice), Eli and Stella were babies that were easy to please. I have been largely too busy caring for all of them over the last eight years to spend much time thinking about what might have been, or what might go wrong.

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What really resonated with me was Ramaswarmy’s reaction to her son’s autism diagnosis:

Then there is my brilliantly singular, loving and brave son. Before he was diagnosed with autism (that happened this year, too) I feared this moment: how will we manage? What will we do about school? How will he develop? Is everything going to be OK? The mystery and idiosyncrasy of autism can be frustrating, but it is also a visceral reminder that none of us knows what lies ahead and that compassion is the most powerful weapon against anxiety. So, here I am, living and thriving in the future over which I once catastrophised. And you know what? It is not so scary after all.’

We have had Sam’s birth described as a catastrophe, and in purely medical terms that may be true. But it has not been a catastrophe for our family. Sure there are difficult times, and complications, and we are sometimes sad and frustrated, but there is no catastrophe here. Something that was unfamiliar and therefore terrifying has become normal to us, and with familiarity comes an ease (hugely helped by the privilege of having carers to help and living in an adapted house).

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Over Christmas, all the kids were largely at home every day for two weeks, something that is rare, which meant they spent more time together than usual. Stella can now talk and asked about, or talked about, Sam at least every hour. Sam happily tolerated her climbing on his wheelchair, wiping his face, pressing her cheek into his. Eli is currently obsessed with gags about bodily functions and Sam encouraged him by laughing at his poo jokes. Sam let Eli play with all of his Christmas presents. Stella clambered on Eli and ruined his games and he only snapped after such goading that any jury would be on his side. Sam and Eli watched Star Wars for the first time and were scared and excited by the same bits. We went ice skating, for walks, swimming and to the cinema.

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The ‘mystery and idiosyncrasy’ of cerebral palsy can be difficult, but it is also a prompt to live this life that is happening right now, even if it is one that would have counted as a bad outcome at some point. We have three healthy kids, and it’s not so scary after all. Are our family the survivors of a disaster, or are we lucky? Perhaps ask me again when they’re all teenagers, but on the basis of this Christmas we’re extraordinarily lucky.

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Different kids, different kinds of walking

If, like us, you take the view that your child’s disability is part of him and try your hardest not to be negative about it in front of him, how far do you take it?

Stella has just started walking. She’s 13 months and since working out how to take a few steps two weeks ago, she has been practising at every opportunity. She has the typical waddle of a baby and is totally unfazed by dropping to her bum every so often. It’s utterly joyful to watch. If you’re feeling at all depressed by the state of the world, I would recommend spending some time watching a sweet one-year-old walk around like a very tiny drunk.

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It feels like a privilege to watch a baby develop these skills and like a small miracle when they keep their balance and toddle off. We, more than most, appreciate the wonder of a baby learning to walk.

And because we are all so amazed we have spent a lot of time talking about it. Visitors comment on it. It can all be a bit of a Stella love-in.

I started to feel a bit uncomfortable about it. How does Sam feel about Stella learning to walk on her own? Is he sad that she is doing something he can’t? When we congratulate Stella does he hear an implicit criticism of him not walking? Was he not really thinking about it much until we all stood around going on and on about how brilliant she was?

I spent a day or two trying not to talk too much about Stella’s walking. Acting as if it was no big deal. Then Eli asked me if I was better at maths than him, and I wondered for a moment if I should soften the blow. But then I decided to tell him yes, I was. And I said I’m definitely better at maths than James. I do have an A Level in maths after all and neither of them do.

It struck me that we can’t spend the rest of our lives not being honest about who is good at what, and what one of us can do that the other can’t do as well. Some of our kids will be good at remembering obscure cricketers (James’s genes), some will be good at chemistry (my genes). Pretty unlikely one of them will be talented at everything – so they will all have to experience that irritating feeling of knowing your sibling is better than you at something. In Sam’s case, the nature of his disability is such that he will do lots of amazing things, but some physical skills will constantly elude him. Eli and Stella will do things that he can’t.

Obviously, accepting that fact doesn’t mean we need to ask questions like, ‘Isn’t it a shame that Sam can’t walk along walls like Eli can?’ (this did actually happen, achieving nothing except drawing everyone’s attention to the disadvantages of being disabled and tainting an otherwise pleasant walk).

I think we have to avoid this kind of direct comparison with all of our children (tricky with Eli’s constant questions comparing me to James, James to Superman, Superman to Spiderman, etc etc). Sam won’t walk unaided, but his school annual review lists ‘walking’ (with a supportive frame) under the list of What Sam Likes. Each child is on their own track and we should only compare them against their progress on that track.

 

Ultimately, I need to chill out and enjoy watching a small child negotiate going downstairs backwards and a four-year-old learn to write. These gross and fine motor skills are easy for parents to take for granted. Do not. See them for the incredible feats of co-ordination that they are. Hold them dear and cherish each milestone.

As a postscript that demonstrates that being an ally to my disabled child is still very much a work in progress, I should mention that I suddenly realised I had written this whole post without asking Sam what he actually thought. So I sat down with him and his eyegaze computer, and modelled what I thought:

‘Stella – walk – great’

I asked him what he thought. He chose:

‘I don’t want to do it’ … ‘Good’

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He then got frustrated that I was delaying him listening to The Faraway Tree.

Fair response. Jog on, Mummy, stop asking me stupid questions about my sister walking…

Playing for laughs (via eyegaze)

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I’ve got three kids! I don’t have much time to write blogs! And we have moved house, again, so things are as relaxed as usual round here.

In amongst the chaos and many, many boxes, Sam has been continuing to use his eyegaze computer. It travels to school with him every day and then he uses it at home for a mixture of entertainment and communication. Sam is building skills in using his eyes and navigating around software on a computer, and much of this is by playing games or other activities that he finds motivating. Like everything to do with kids learning something, anything, it’s best done through play as far as I can see.

We have various activities that he enjoys on his computer; his favourites are, unsurprisingly, stories. Some of which are ‘multiple choice’ where he has to pick the right word to continue the pre-programmed story. Others are computer equivalents of audiobooks where the entire text of a novel is on the computer and Sam can choose the story he wants, select the chapter, and then it is read out to him (in stilted computer voice, but he doesn’t seem to mind). Crucially, he has to keep selecting ‘Speak Paragraph’ in order for the story to continue, meaning that he has to engage consistently.

Sam’s current favourite book to read like this is Mr Stink by David Walliams. We have the actual book and read it to him frequently (actually I don’t, generally because I’m often preoccupied with a smaller child, but others do including my dad who assures me it is great and totes emosh). Other times Sam sits at the table reading it to himself via computer. It’s brilliant.

We hadn’t foreseen quite how fantastic the computer is for Sam and Eli to use together. The laptop is touchscreen and so they can play games like, for example, Splat the Clown where Sam can splat using his eyes and Eli using his finger. There aren’t many activities that they can do together like that, with total parity.

The current hit, however, is the most simple of all. By navigating through various screens within the PODD communication software Sam can get to a page which just has Yes, No and Don’t Know buttons.

Through trying to gauge Sam’s reliability of answering yes or no to questions (Sam doesn’t have a totally reliable yes or no, which is a work in progress for him and something about which I could – and may at some point – write an essay…), James invented a game of asking him sets of related yes/no questions, some of which are totally ridiculous. It is a good way of him practising giving us a clear yes or no when we know he knows the answer. He is definitely making progress on this. The thing we didn’t expect, and which is in danger of slightly undermining our carefully constructed strategy, is that Sam is now giving us the ‘wrong’ answer because it’s funny.

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Oh the laughs! The advent of this game has also coincided with Eli hitting the zenith of his life so far where he can successfully make every member of our family laugh. Let me assure you that watching one of your kids make the other laugh is one of life’s pure joys. Watching Eli make BOTH of the other kids laugh is very, very lovely and makes my heart sing. All the feelings.

So it isn’t just James and me asking the yes/no questions, but Eli too, and Sam bloody loves it.

In this clip I’m asking the questions, and modelling the answer. I think you get a real feeling for how much respect my children have for me.

In this (longer) clip, Eli’s asking the questions and no doubt because I’m videoing, Sam is not answering. Sods law. Then while I’m waiting for him to answer, he navigates out of that page which is autonomy in action, and is the physically disabled equivalent of a child wandering off because they have lost interest. He actually then went to a different yes/no page, through a different pathway in the software (which I didn’t know you could do), and then we continued. His ability to do this, without us mediating, is as pleasing to me as all the chuckling.

In the interests of equity between my kids, I leave you with a video of Eli making Stella laugh. I defy you not to feel cheered by a small child talking nonsense and a baby thinking this is the height of wit.

 

Sam can cycle!

Milestones are a tricky thing for parents and children like us and Sam. Many of the obvious ones from early childhood never materialised and perhaps some never will. If they do, they will be the result of years of hard work on Sam’s part, considerable therapy input and a lot of patience. This is why we start to talk about ‘inchstones’ (as I have done here) which are no less valuable than the typical milestones. Inchstones recognise the scale of greys that we operate in; Sam can’t sit on his own but has worked up from always being held to being able to sit unsupported for two minutes. In our world, this is brilliant progress.

So there we are, pottering along, Sam working really hard on every aspect of his life, accumulating the inchstones. James and I are a bit distracted by the birth of Stella. It’s mid-winter (albeit one of the mildest winters on record) so Sam hasn’t been going out on his trike that much but we have been trying on the weekends when it isn’t raining…

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And then…

He is off! Riding his trike on his own! An unequivocal milestone! Starting with the odd couple of independent cycles with his legs, building up within minutes to confidently pedalling his legs round and round, spinning in circles. I wasn’t there to start with but James sent me jubilant videos by phone and by the time Stella and I got there Sam was happily cycling around the basketball court. We were all so happy it’s tricky to find a video that doesn’t have someone shrieking in it (I’ve muted the sound to save our blushes) but no-one was more excited than Sam himself.

It’s fantastic.

Because cycling is fun.

Because cycling is what six year olds do.

Because it’s Sam being able to move from one place to another entirely under his own steam which he hardly ever does (he can walk in his walker a bit but it takes a lot of effort and is therefore a bit inconsistent).

Because learning to ride a bike is a bona fide milestone (granted Sam can’t yet steer himself but let’s not quibble over technicalities).

Because Eli also learnt to ride his bike in the same week and it’s lovely for brothers to do things together.

Because, above all else, Sam was proud of himself and that is a beautiful thing.

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Just in case it’s a while before another milestone comes along, I’m going to dissect a little how this one came about:

Patience and persistence

We have now had the trike for 15 months. We don’t use it every day but most weeks we have pushed Sam in the trike with his legs getting used to going round. I wrote a blog in April last year about Sam starting to cycle himself but it’s not until now that it’s happened reliably. These things take as long as they take. We must be patient and give Sam the chance to learn and develop the skills – it’s no use expecting things to happen quickly and, equally, just because he hasn’t done something (be it cycling, or learning letters, or using an eyegaze computer) within the arbitrary timescale imposed by some adults, doesn’t mean it won’t happen eventually.

Opportunity

As I wrote about here, we bought the trike privately as there is no statutory funding for such equipment and it was really expensive. Sam therefore had the opportunity to learn how to cycle, little and often, over time with no pressure. Kids like Sam have to be given access to equipment and activities even though things like trikes cost over ten times more than a normal child bike.

Enthusiasm

James and I are pretty good at taking Sam out in the trike but probably the thing that tipped the balance in favour of success was his new nanny/carer. She was with James and Sam the day that he nailed it and was coming to it with a level of enthusiasm which we had probably lost over the last 15 months. Sam really likes her and she was encouraging him to pedal on his own having given him a little push, and off he went. Maybe if James and I had been doing the same old pushing we wouldn’t have realised he was ready to do it on his own. It’s perhaps an obvious point but enthusiastic, skilled carers contribute hugely to Sam’s life.

Self-confidence

Because Sam is so dependent on others to help him with every aspect of his life, it is rare that he can do things on his own or that he can take full credit for them. I love that he was so pleased with himself for cycling, and that all of his patience and determination over the last year has been rewarded. When he went to school after the weekend we recorded a message about it on his communication button and sent video links to his teacher so his whole class watched him cycling. His teacher said he was thrilled when they discussed it and the idea of him sharing his huge achievement with his friends with a big smile on his face makes me feel all warm and fuzzy. The boy deserves a bit of self-esteem.

Siblings

Eli learnt to really cycle his pedal bike the day before Sam’s achievement – he had been getting close for a while but required a hand on the back of his neck at all times which limited progress somewhat. It may be coincidence that the boys did it together, but probably not. They really keep an eye on each other and the interaction between them is great for them both – Eli wants to do what Sam does and learn what he learns, Sam is encouraged to try games and activities that he wouldn’t tolerate at all if Eli wasn’t around. This is the latest in a long list of examples of why having siblings is brilliant for them both.

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Brain surgery

It’s possible that some of this physical progress is down to the stimulators in Sam’s brain. The jury’s out at the moment – let’s wait and see how the rest of the year goes.

So hooray for big orange trikes and small persistent boys.

Sister Stella

Sam and Eli’s sister, Stella, is four weeks old. We have survived a month with three children, something which feels like no mean feat.

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That seemed unlikely after our first family outing one week in, when we made it just 100m from our front door before Eli broke the rules about how far ahead he was allowed to go on his bike, we shouted, he started crying, Sam started crying because Eli was crying, and we all went home. Since then we have managed a family swimming trip and some less eventful local walks. So we might actually be capable of leaving the house as a family of five.

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Both boys have been unbelievably sweet with Stella, and very tolerant of the disruption and imposition involved in having a new-born sister. Through a combination of James having a month off work, numerous carers and family members helping us out, and a baby that sleeps a lot, we have been able to keep things as routine as we can. Sam has shown once again that he can cope with a lot of change and take it in his stride, while Eli has been demonstrating his capacity to be both a kind big and little brother. We have all had a lot on, but we’re doing okay

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We do not approach birth lightly. Sam’s disability is because of problems during his birth and we therefore know too much about the risks of things going wrong and having lifelong implications. Eli was ill immediately following his birth and had to be admitted to NICU. We sort of assumed that our third baby would end up in NICU, even though a neonatal consultant took the time to explain to us how (very) likely it was that we would have a totally healthy baby.

One of the people who really understood our concerns about the birth of this baby was the obstetrician who we saw throughout this pregnancy and who had previously delivered Eli. She is someone we have huge respect for, whose judgement we trust, and who had successfully guided us through my second pregnancy when we were at our most anxious about having another child.

This time we knew in advance that she would not be able to deliver the baby because the elective caesarean was booked during the Christmas period when she would be on holiday. Another obstetrician would do it, it would be fine, we told ourselves. As we prepared on the morning of the birth, getting in to gowns and talking photos of my puffy face, we were calm but nervous. And then she popped her head round the curtain to say hi. Dressed in jeans and tshirt, she was officially on holiday but had come in specifically to do my caesarean section.

That, there, is an emotional moment: the joy of knowing we were in her hands (literally in my case), that our baby had the best possible chance of therefore being fine, that someone so thoroughly understood how difficult this all was for us and had come into work especially.

And then Stella was born, screaming before she was out of my womb, to be immediately declared, with a thumbs up, totally and utterly healthy by the neonatologist we had demanded be on hand to check. No resuscitation, no breathing difficulties, no-one at all worried about anything. She breastfed immediately and, following the facilitation of the obstetrician who knows we spend too much time in hospitals, we were able to go home the following day. You would not believe how uninterested everyone is in a healthy newborn baby – barely any observations, no-one came to check her overnight. If you hadn’t had experiences like ours you would have no idea of the anxiety and stress lurking just across the corridor in the neonatal unit.

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We have now had four weeks of admiring and nurturing little Stella and she is a delight. Third time lucky, we had a baby who didn’t need a canula in their head, or a tube in their nose. She immediately breastfed and sleeps like a champion (just not always at night-time). We take none of this for granted – it is luck of the draw whether you have a baby that does the basics easily or not.

We have not lost and will not lose sight of what a privilege it is to have her here with us, healthy and thriving. Nor what a delight it is to share this baby girl with these boys of mine. We are all lucky.

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How we learn to talk

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I have just done a two day course on a system that I hope will help Sam communicate with us and everyone else.

Communicating is one of Sam’s biggest challenges. He has a lot to say, but his severe disability hampers all of his efforts to tell us what he thinks or wants: he can’t speak, he can’t point, yet he understands a lot.

He has found highly effective ways to get round this day-to-day. He can smile or frown, laugh, shout or show us his bottom lip (the degree of protrusion of the lip is directly proportional to his sadness, on a spectrum that ends in full-blown sobbing). Whingeing indicates dissatisfaction. Looking expectant means ‘I’m interested’.

Sam has the intellect to express far more sophisticated ideas and desires than this – but he needs the tools. So we are working with Sam’s school and a number of speech and language therapists to maximise his opportunities, using Assistive and Alternative Communication, or AAC, the term used to capture a whole range of communication systems that don’t rely solely on speech.

Everyone involved in this effort comes together at a termly review meeting. Last week that involved eight professionals sitting around a table for several hours discussing progress. The combined level of expertise is immense.

And partly because of all of this input, Sam is doing brilliantly. In last week’s meeting someone pointed out that (PROUD MUM ALERT) Sam’s spelling is on a level with his non-disabled peers, so it’s important to not push him too hard. He already has to work much harder than a typical kid to spell consonant-vowel-consonant words but he’s doing it – on an eye-gaze computer or by looking at magnetic letters with Granny.

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The major new communication concept we are introducing to Sam is a PODD book, developed by an Australian woman called Gayle Porter, a minor celebrity on the aided language scene.

PODD books are full of symbols that you point at to express yourself. The ambition is that Sam will eventually be able to show us which symbols he wants to ‘say’ (video of a child using PODD here).

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The success of using aids like PODD books is totally dependent on the expertise of the people surrounding Sam. The course I was on last week was an attempt to increase my confidence and knowledge.

I came away enthused. This has huge potential for Sam. But at the same time I’m nervous, intimidated even. I took away three main insights from the course that really highlighted how big an endeavour this will be:

1. Do we have the stamina to do this justice?

A typical child hears spoken language for at least 18 months before they start talking (over two years if you’re Sam’s brother Eli). It therefore follows that we should be modelling use (otherwise called ‘receptive input’) of the PODD book to Sam for at least a year before we expect him to be using it with us. If we were really to mimic normal acquisition of speech, James and I would use it to talk to each other in front of Sam.

At the course we were shown totally inspirational videos of young children communicating, in ways that just would not happen if they hadn’t been taught to use PODD. But … in some of the videos, their mothers (and they were almost exclusively mothers) had modelled use of the PODD books with their children for over a year before their children started interacting with the book.

The level of skill of these women is impressively high – they can navigate expertly from page to page and find symbols really quickly. But even more important is their level of determination. They have dedicated years of their lives to teaching their kids to use PODD books, even when the kids weren’t apparently engaging with them. It is hugely inspiring, but also massively daunting. What if we’re not committed enough? What if we get bored and demoralised, and that means we fail Sam?

2. You can’t learn a language if you’re placed on mute

If you think of the PODD book as Sam’s way of talking, then you have to have it available to him all the time. Otherwise you are effectively silencing his voice. It is close to the equivalent of gagging a verbal child to stop them talking.

We are already guilty of doing this: we introduced Yes and No symbols on Sam’s chair so he can look at these to answer questions. A few weeks ago, the No got puked on, the sellotape got wet and the symbol fell off. Despite daily good intentions, I still haven’t got round to sticking it back on. And I haven’t got round to putting the Yes and No symbols on his wheelchair.

I introduced an opportunity for him to tell me things and them I took it away. Shit.

3. This needs to be a whole family enterprise

On the course I also saw videos of young children using PODD books really competently with their disabled siblings. Eli is really trying to work out the rules around him at the moment and where Sam fits into it: for example, ‘big boys’ walk and babies don’t, but Sam is a big boy and doesn’t walk (cue confused/amazed face). We’ve had discussions about whether Sam can hear Eli talking, because normally people talk back when they hear you, but Sam doesn’t talk.

Eli already talks to Sam on his terms – he says ‘night night’ to Sam every night and waits for Sam to look at him because he knows that’s Sam way of saying goodnight back. When Eli asks Sam a question he says, ‘Sam, can I play with your Peppa toy, YES OR NO’!

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Eli could easily pick up the way a communication book works (the photo above shows him at 18 months getting interested in one), but only if he sees us using it. We have to normalise it within our family, even if the wider world insists on only speaking to each other.

I should reiterate that I really am filled with enthusiasm – the PODD system has been thoughtfully developed and children exactly like Sam have learnt to use it proficiently. But, oh my goodness, what a weight of expectation. Remind me of this blog in a year, when my enthusiasm for pointing at symbols might be wavering and I need to remember that we knew we were in it for the long haul.